Tons of new friends, Welcome!!! I will try and give a brief overview of our little man, Spencer Michael Patrick Kelly. I am his Daddy and I write all the post on this page, apparently I write like a woman, and Im good with that :) Spencer was born on Sept 20th, 2011, he will be 3 this year. We were told we could never have children on our own, the natural way. Our first son, Riley Liam Patrick Kelly, was born August of 2006, soon to be 8. Riley was 5 years in the making, 5 artificial inseminations, two miscarriages, one DNC, and on invitro fertilization. My wife Kathy, had HELLP syndrome with Riley, and an abrupted placenta, luckily we were already at the hospital, but she almost bled out and I almost lost them both, it was an emergency C-section and I asked Kathy where she wanted me, with her or with the baby, she said with the baby. I had given her doctor instructions, if there had to be a choice, I choose my wife, she chose her baby. Obviously they both pulled thru, Kathy was touch and go for 3 days as her body began to shut down. Five years later, 6 months after we got rid of all our baby stuff, I was walking out the door to buy our first new car, Kathy came out of the bathroom with the stick. Sean she said quietly, Im Pregnant Im still waiting to get that new car! Her pregnancy was hard, she was 41 and automatically considered high risk because of the HELLP syndrome, at 4 months she was already presenting as if she was 9 months. Kathy had 7 amniotic drains, removing an average of 2 liters each time, hindsight would show this was because of the Myotonic Dystrophy. At 37 weeks, she was at her weekly specialist appointment, Spencer failed the stress test, the decision was made to delivery the next afternoon, via C-section. Spencer suffered global hypoxia ischemia at birth, he went 6 minutes without oxygen, effectively destroying 33% of his brain, it took another 8 hours to get his CO2 levels within proper range, Spencer continued to suffer brain damage during this time. During the delivery, Kathys placenta had grown into her uterus, upon a removal, a major artery was cut and they could not stop the bleeding, Spencer was being taken from the room, again I asked the question, almost 5 years to the day, Where do you want me pumpkin, you or the baby? Again, she chose the baby. The picture at the top of his page, he is being baptized and given last rites, it was then that they brought Kathy in, still in her bed, that was the first time, four hours later, that I knew she was alive. The decision was made to transfer Spence to Childrens Hospital in Omaha as soon as he was stable, the following day the decision was made to transfer him regardless, we were told he could die enroute, or he would die if he stayed there. 36 hours after a C-section with complications Kathy was discharged, this is how sure they were Spencer was going to die that they wanted the mother there also, a week later Kathy was rushed back to the hospital with blood clots in her lung. The doctors, and there were a lot, wouldnt tell us how long he had because they didnt know what he had. Six weeks later, after a specific blood test, we were told that he had Congenital Mytonic Dystrophy, meaning he was born with it, due to the brain damage he now also had Cerebral Palsy, and later he would develop Pulmonary Cardiac Hypertension as a result of his lungs collapsing a combined 15 time, 6 times on the left, 7 on the right, and twice both of them at once. Funeral arrangements were made twice, once right after birth, and once the week before thanksgiving when Spencer got both MRSA and Pnuemonia at the same time. We were told on four different occasions that it wouldnt be a bad idea to Just let him go, we asked if he was in pain, they told us no, I told them Then let him fight, the moment he begins to suffer, we will let him go home A week after thanksgiving, and 3 days before a tracheotomy was scheduled, he began breathing way over his vent, we decided to try and extubate, he exceled and has never had to be re-intubated again except for his surgeries. The doctors started calling him The Miracle of the NICU other doctors from around the region came in to see him, he became a teaching case. A month later, the baby they said would never breathe on his own, the baby who would never come home, show emotion, know who we are, came home. Spencer is ticklish, laughs all the time, says Ma Ma, Da Da, and of course NO NO NO NO! To date, Spencer has had 14 surgeries, has been hospitalized an additional 15 times for various issues, usually respiratory related, and because of the brain damage, we know he will never walk, and thats OK, if he cant walk, he cant fall He is getting stronger, making our family stronger, and is a true joy to be around. I was the ass who used to make the short bus jokes, now I am a very vocal advocate for the mentally and physically disabled. When Spencer was diagnosed, Kathy was also diagnosed, this disease is terminal, it will kill them both, but Ill be damned if it will be anytime soon!! Every day is a struggle, everyday is a triumph, my eyes have been open to a world I never bothered to pay attention too before, and I have embraced it. If you have come here to pity us, you may leave now, pity is NOT allowed on this page, nor are donations, this is my burden, my privilege, and I will gladly carry it. We have it worse then a lot, but we have it better than most, after all, I still have my dashing good looks!! Our motto is Prayers, but NEVER pity and on occasion I borrow from the Nebraska Cornhuskers, Day by day, we get stronger and stronger, UNTIL WE CANT BE BEAT, WONS BE BEAT!! Thank you all again, and God Bless you, if you have ANY questions, you can either message me or post it, I will answer all.
Posted on: Thu, 07 Aug 2014 03:01:23 +0000
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